Don’t believe the hype

Some doctors tell you how to live when diagnosed with a terminal illness, “Relax, take it easy, don’t exert yourself.” Yeh right, I’ll relax when I’m brown bread! They mean well but everyone’s different, different mindsets, different body’s, different fuckin everything.

I’m lucky in a strange way, in that from day one most of my medical professionals realised early on I wasn’t going to go home and wait for the grim reaper to come and get me! My professor has always gone with the flow with me. She’s never told me what’s right and wrong, she’s only advised me. Although I’m sure she scratched her head when I told her about the first marathon we done, the thing with MND is that you don’t get better you only get worse, so I understood everyone’s concern especially with MND being a muscle wasting illness. Your meant to try and build muscle leading up to a marathon so I and everyone else knew we were sailing into unknown territory. Fuck it, we only live once don’t we?.

I’ve read some excellent reports about how to cope with MND over the last 5 years, but I’ve also read some absolute shit on the subject. Reports on how a cure can be obtained in China, India and other exotic places. Of course nothing in life is for free. For the small amount of around £20,000 these so called Drs claim they’ve discovered a wonder drug that will cure you. Trust me, if it worked my professor would know about it. I trust her and I trust my clinical trials nurses even more. The MND community is an extremely vulnerable one. People try and succeed in exploiting this for their financial gain. And because we have nothing to hope for we will try anything to help us survive, snake venom, spider venom, fuckin shark snot. If someone offered us dragons blood we’d take it. I know it sounds like a potion from a Harry Potter film but honestly you’ll be surprised what people will try in a life and death situation. There’s vultures out there that prey on our community and the longer we go without a cure the more desperate we become. This is something I hate seeing. It’s not nice reading about someone in the same predicament as yourself being exploited.

Have I ever thought about trying snake venom etc? No, but I don’t blame people who explore these avenues, the only thing I’ve got in common with a snake is that we both fuckin rattle from time to time.!! MND Problems. My positive mindset is my weapon against MND, Oh and the odd spliff (Thank god for Pink Floyd!!)

I’m having terrible side affects off that snake venom!!! Enjoy life…

Speaking of dragons, not so long ago my lad Vinny who was 8 at the time asked me, “Dad, you know dragons? Are they real?” “No mate, but when you’re older and you go for a bevvie in town with your mates, you might bump into one!”